Dare to dream

Prepare for a bigger and better life as you map out your goals and aspirations under the National Disability Insurance Scheme (NDIS).

The NDIS is expanding the horizons of people under the age of 65 who have a permanent and significant disability as it rolls out across the country.

Many people are thinking big as they plan their transition to the new scheme, which offers reasonable and necessary supports that are related to a person’s disability and are needed for them to live an everyday life and achieve their goals.

Duncan Wallace, CEO of SpinalCure Australia, is keen to relaunch into the wild. He has quadriplegia and before his injury was a regular scuba diver. But since then he has dived only once. That was on his 50th birthday, when he was assisted to a depth of 15 metres. Surprisingly, his underwater joy was matched by surface relief: an unexpected side effect after the dive was the absence of spasms and, therefore, no need to take anti-spasm medication for the rest of the day.

He dreams of doing one more dive, this time with the whale sharks in the warm, jewelled waters of Ningaloo Reef in Western Australia (WA). He’s not expecting an all-expenses-paid trip to WA but possibly the assistance of a carer to help him with personal care during the trip.

Duncan is planning to transition to the NDIS with the support of Spinal Cord Injuries Australia (SCIA) and hopes it might lead to him living his diving dream as well as improving his life back on dry land.

Importantly, Duncan has prioritised the need for a new standing wheelchair, as his existing standing chair is on its last wheels. Such a chair enables him to work a full day in the city and change positions, which has meant no pressure sores or urinary tract infections since he has had his existing chair. However, he doesn’t have the means to replace his chair. He bought and subsequently maintained his existing chair using his own cash to cover the $20,000-plus costs, as the New South Wales Government equipment funding arrangements don’t extend to standing chairs. He hopes things are different under the NDIS.

Duncan also hopes the NDIS covers family reunions. He is close to his parents, who live in Britain, but they are in their 90s and won’t be around for the long term. He wants to see them more frequently but he needs a carer to accompany him on the flights and for personal care during the visits.

The same goes for his job: motivating donors to raise funds to cure spinal cord injury cannot always be done from the comfort of his Sydney office. Business trips to Canberra, Melbourne and other places also require a carer to accompany him.

This glimpse of Duncan’s goals and aspirations is the start of what he hopes becomes a reality, with sustainable equipment, carer assistance and other services as he ages.

Melissa Whitley also has her aims and dreams, with SCIA supporting her through the NDIS planning process. She has incomplete quadriplegia and lives independently in her own unit with drop-in support. However, she says the support is underfunded and the neighbourhood isn’t the quietest or friendliest at times.

She works as a trainee teacher at a childcare centre not far from her home. This is one of Melissa’s passions and she loves seeing the children she calls her “little friends”. Although her work helps her to engage with the community, she still feels socially isolated. She says her co-workers are friendly but she feels too shy to ask them out for coffee.

When Melissa is not working, she attends a community participation program but she feels she doesn’t fit in. Also, the program is meant to help her prepare activities for the childcare classes, but she says she doesn’t receive the assistance she requires. This makes her feel disappointed that she is letting her workplace down by not taking any prepared work to the children.

Melissa is hoping her new NDIS package will enable her to move into a better supported accommodation model with people of similar disability, who she can befriend and go out with to enjoy the occasional meal, movie or rock concert. She’d also like the opportunity to attend a different community participation service that can provide adequate assistance to meet all of her vocational, physical and personal needs.

Melissa also has a lifetime dream of going on an African safari, like those she enjoys watching on David Attenborough’s documentaries. However, she feels it’s far too expensive, so she has decided to aim for fulfilling her other dream of experiencing more affordable parts of beautiful planet Earth. But you never know—one day she might get to gaze over Africa’s rustling sub-Saharan grasslands and espy the commanding presence of a pride of lions.

Closer to home, getting the right support is also a priority for Richard Komorr. Three years ago he was paralysed from the waist down two days after the insertion of an epidural catheter into his spine to control pain following lung surgery. Over time he regained his ability to walk, but he continues to experience bowel and bladder problems, loss of sensation in his hands and feet, reduced strength and stamina, and difficulty bending down.

The NDIS has contacted him to get permission to touch base with his doctor etc and he hopes to have a planning session with them soon. SCIA is supporting him through this process.

Although Richard is walking now, as he ages he may need a wheelchair again. So before the NDIS, he and his wife Deborah planned ahead and moved into a more accessible home on a flat block of land. He says the new home is more suitable for his needs and he hopes the NDIS will help it to stay that way.

Suitable work options are also important for Richard. Before his injury, he was working primarily in IT support and then retrained as an assistant in nursing. After his injury, he returned to disability support work, assisting people with behavioural issues. However, he questions his suitability for this type of work and is hoping the NDIS can help him retrain into web design.

Richard’s injury has also meant that Deborah has been supporting him emotionally and physically. This isn’t easy, as he also struggles with chronic pain and interrupted sleep. Richard hopes the NDIS will provide him with professional support to give Deborah a break, allowing her to be his wife, not his ‘support worker’.

Before his injury, Richard and his wife were avid skiers. They have returned to the slopes, but these days he must stick to the beginner hills with Deborah assisting. This means she misses out on what makes a snow holiday fun for her. Richard wants this to change: if a carer can assist him on the beginner runs, Deborah can ski the more challenging slopes. He hopes the NDIS can fund a carer and their lift ticket.

This snapshot of Richard’s dreams and desires is the beginning of what he hopes transforms into a well-rounded life under the NDIS.

The NDIS may not solve all your problems but it can set you on the path to living the life you thought was beyond your reach.